I hadn’t been living with MS for long, when I began to realise it didn’t play by rules. In fact, it seemed there weren’t many certainties at all. Sometimes this brought good news: the disease might not be very disabling and there could be good, stable periods. But there was no guarantee of this. Soon after my diagnosis in 2010, I began to realise that I wasn’t able to predict what might happen tomorrow or five years from now. Any clear, straightforward path into the future had disappeared. Instead ahead lay changeable, rough terrain in which it was difficult to see far ahead, to know which way to turn for the best, or when danger would hit. And a place in which many of the principles I’d learned and assumptions I’d made, was no longer a secure one.
I began to think that living with MS seemed a bit like living in the uncharted territory of the lawless old American Wild West: a place of hope and opportunity (for the settlers at least), but also often tough and hostile; a place where you had to rely on your wits, make difficult decisions and forge your own path ahead; a frontier where survival was the name of the game.
Certainly, there is no doubt that MS is on the frontier of neurological science. It was disconcerting at diagnosis to realise I had a disease for which researchers were still trying to fathom what the questions should be, let alone the answers. Some clinical experiences were often bizarre and seemingly rudimentary: the prodding with pins or cotton wool to test sensation, the reliance on personal testimony to monitor symptoms, the few and often risky treatments. This was not what I’d expected of medical science in the twenty-first century. The culture of patient-led decision making with MS also took a while to adjust to; sometimes it is easier to be told what to do. Then, of course, I began to appreciate that we were lucky to have drug options at all and with support, education and experience, I’ve grown more confident in making my clinical choices.
Meanwhile, it seemed my own relapsing-remitting MS didn’t like playing by the rules. My first autumn with the condition saw the constant deterioration of my walking and fluctuations of other symptoms. My MS was bearing no resemblance to the acute relapses and full recovery of my peers, or to the information I’d been reading. I felt lost, as if I had no trail to follow at all. I didn’t know where my disease was taking me. But the words of a woman who’d been living with MS for 30 years offered reassurance and a path through the wilderness. She’d observed that her condition, and often that of others also, never fitted neatly into the defined categories either. So, after another MS’er showed the way and becoming acquainted with the terrain my MS was covering, I settled into my journey.
But still there are the constant decisions to make: which way to turn? There are the big choices about work, children or relationships, sometimes hugely influenced by MS, often happily not. But there are also the daily decisions about how to manage your condition. Do you go out tonight or save your energy for a special lunch the following day? Do you take your stick on the bus so people know you might need a seat, or is this giving in too early? Do you take it easy and safeguard your health or live for the moment and do today what you might not be able to tomorrow?
Recently, I was commissioned to write a ‘Choose Your Own Adventure’ story about living with MS by Northumbria School of Design. The different narrative pathways that the reader has to choose are designed to evoke the uncertainty and constant decision-making involved in living with the condition. Launching the book this April and seeing how the topic resonated with others was inspiring. I hope the book and the stories within it illustrate the fact that there is no ‘right’ path through multiple sclerosis: we all have a different array of symptoms from the disease itself; we all respond differently to the diagnosis and make different decisions about how to manage our conditions.
But by sharing our stories and helping others through the most treacherous stretches of this condition, our journeys should become less lonely and less confusing. With more support for MS’ers, there is the opportunity for people to feel empowered, in control and not overwhelmed by the often challenging decisions the disease forces. Let’s help each other to live more fully and purposefully with MS and find our own paths through.
Copyright (c) Cathy John 2012. All rights reserved
Cathy John is a freelance writer. She’s written articles about living with MS for The Independent and spoken about it on BBC Radio 4. Her popular blog can be found at lickingthehoney.org. She won the MS Society Media Coverage of the Year Award 2011 for her feature on ‘Coming Out’ with the disease and also for her blog. Cathy is a Creative Consultant on two groundbreaking new online short films about a young man’s diagnosis with MS, Gallop and Belong, to be launched summer 2012 and is the author of Look into my Eyes a book exploring the uncertainty of living with MS. She was diagnosed with relapsing-remitting multiple sclerosis in 2010.
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